The Rare Life

When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads. So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1,...

When Ashley’s daughter Sadie was born, medical complexity took their family by surprise. A hospitalization post-birth eventually led to a life-limiting diagnosis of childhood dementia, and Ashley’s family was turned completely upside down. In this raw and real episode of The Rare Life, Ashley shares what it was like to receive her daughter’s diagnosis, the ways this revelation al...

It’s wild to think about, but we’re kicking off Season 9 of The Rare Life! And this season, it’s all about relationships. Relationships with your child, your spouse, your peers, your friends, your loved ones, and more! We’re not holding anything back, so some of these topics might get a little spicy! Plus, we’re introducing our 2024 Friends + Family Rare Disease Day Fundraiser! It’s our first majo...

There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience t...

No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if w...

When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner. And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physi...

We’re closing out Season 8, and this time I have Alyssa Nutile with me to celebrate the end of another successful season. The Rare Life went through some major changes this past year (if you remember from the Season 8 Kickoff – we're a nonprofit now!) And that meant we spent a ton of time working behind the scenes on some really exciting projects to keep us going for years to come. We...

What happens if we go first? Who will love our child and protect them the way that we do? Society has a view of how the parent-child trajectory goes, and the situation with our medically complex and rare kids feels so backwards, so where can we turn to find resources to set up our children and keep them safe when we’re gone? In this episode, Amanda Griffith-Atkins and I tackle this tough rea...

When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising ways. Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share how their faith has changed since having a child wi...

There’s this moment in every parent of a rare or medically complex kid’s life, where you suddenly realize that the medical team you’re working with doesn’t know everything and might not know how to make the best medical decision for your child. It’s terrifying... but it also feels a little bit like a rite of passage by now, and you can only hope that the way you find this out isn’t through pain an...

As necessary, important, and life-changing as in-home nursing can be, there’s nothing simple about it. While there are a ton of benefits, there are some really tough parts too. It’s an added layer of administration to deal with, extra personalities in your home to handle, more routines to train, and can come with a lack of personal space. And acknowledging those downsides can feel tricky too, when...

If you’ve been around in the medically complex world for a minute, you’ve surely heard others talk about therapy. But maybe you’re still asking yourself, “have I been through enough to even need it?” Liz Spitzer, PhD and rare mom herself, is here to reassure everyone that we all deserve care, including therapy, no matter how much or how little we’ve endured comparatively. In Ep 138 of The Rare Lif...

Not all of us have or will experience the loss of a child, but we ALL have to navigate some type of grief and loss in our lives. I know this sounds heavy, but in today’s episode grief expert Cole Imperi and grieving mother Leah Deason and I have a frank but honestly kind of soothing conversation about the way grief and loss shape our lives, and how we can move through traumatic moments by understa...

Having to rely on a medical device for your child’s survival is equal parts frustrating and terrifying. It’s not that we aren’t grateful that the technologies exist to keep our children healthy... but medical devices aren’t fool-proof, and when things go awry, it’s traumatic for everyone involved. In today’s episode, Bethany Beazley shares her experience of receiving her son’s diagnosis and how he...

Whether you're trying to manage a career and care for a medically complex child, or you've had to suspend your career for the sake of your family, none of us can escape the impact of this rare and medically complex life. In Ep 135 of The Rare Life, Amanda Griffith-Atkins and I share responses from listeners about the ways their careers have been impacted by having medically complex childre...

Losing a child isn’t something any of us want to think about... However for some of us, we know that we don’t have the luxury of putting off planning the logistics around the end of our child’s life. But where do you even start?   In today’s episode, bereaved mother Leah Deason, pediatric hospice nurse Gina Thuene, and Tiffany Goodchild, a mother who has dealt with hospice care, share their experi...

Like many of us, the diagnosis of a genetic disease for her son came as a surprise to Bek. One moment she had a “typical” pregnancy and the next minute, she had a medically complex baby. That was 13 years ago, and since then, Bek’s been navigating how to parent a medically complex child on her own as a single mother. In this episode, she shares with us just how lonely and alienating parts of her j...

Is it just me, or as the parent of a medically complex child, does hearing the word “self-care” in a general context make you roll your eyes? Most of us are just trying to keep our kids and ourselves alive and mostly healthy. We don’t have time for bubble baths or hours at the gym or spa treatments. So what does self-care look like (in the most feasible and east cringy way possible)? In today’s ep...

Parenting children with medical complexities and rare diseases is incredibly stressful. This isn’t news to any of us who’ve been living this life for a little while. More surprising are all the ways – and there are SO MANY – that stress can show up and cause issues in our physical bodies. From insomnia and exhaustion to weight and body changes to health problems and chronic illnesses, we’re sharin...

Every parent fears losing their child. But for most parents, that fear is vague and instinctual more than it is a likely reality.  When it comes to parenting medically complex children though, this fear isn’t far-fetched, and it’s not something that lives only in our nightmares. The possibility (or in some cases, the certainty) that we could lose our child colors everything from the way we interac...

Have you ever felt like you just don’t quite fit in this community of medically complex parents, because your life isn’t “hard enough” or your child’s disability or diagnosis isn’t “severe enough?” Maddison has been living within this feeling of imposter syndrome for years now, as she’s navigated the long and winding road to finally receiving her daughter Eleanor’s rare diagnosis. In today’s episo...

We’re kicking off another season (number 8!!), and we’re coming in hot with a super exciting update about The Rare Life. Brittany Steitz joins me as we share about a major update that we’ve been working on for NINE MONTHS now, and it’s truly an honor to share it with all of you.   As with each kickoff episode, I’m also sharing a little glimpse into the topics we’re diving into this season (we’ve g...

So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are...

I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of them...

Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day. In this episode, Katherine shares wha...